Deaths and complications due to treating the fake disease known as “chronic Lyme disease”

In pseudomedicine, fake diseases predominate. Basically, fake diseases are diseases that do not exist in conventional medicine as diagnostic entities because there does not exist sufficient sufficient evidence to support them as one or there exists compelling evidence that they are not. Naturopaths, for instance, like to diagnose people with “adrenal fatigue,” which is one of the prototypical “fake diseases.” Basically, it involves a constellation of vague symptoms that may include a combination of several of the following: fatigue, inability to handle stress, cravings for salty foods, difficulty getting up in the morning, and more. Basically, the idea is that the adrenal glands have become “fatigued” and thereby unable to produce adequate quantities of hormones, primarily the glucocorticoid cortisol, due to chronic stress or infections. Of course, there is no such thing as “adrenal fatigue.” It is not an accepted medical diagnosis. That hasn’t stopped a veritable industry devoted to selling “adrenal supplements” and other quackery to treat this nonexistent condition from cropping up.

Chronic lyme disease is another prototypical fake medical diagnosis. This should be contrasted to Lyme disease, which is a real diagnosis and a real disease caused by the tick-borne bacterium Borrelia burgdorferi. Lyme disease symptoms include fever, headache, and fatigue, and it’s characterized by a skin rash known as erythema migrans. The diagnosis of Lyme disease is based o nits symptoms, physical findings (e.g., the characteristic skin rash, which looks like a bull’s eye), and a history of being in an area where exposure to ticks is possible. Laboratory testing can be helpful if appropriate tests are used appropriately. In the case of Lyme disease, that usually includes a two-step process to test the blood for the presence of antibodies against the bacteria that causes Lyme disease, the first step being an enzyme immunoassay, which, if negative rules out Lyme disease. If the first step is positive or indeterminate, then an immunoblot test (Western blot) is performed, and results are considered positive only if both tests are positive. If not treated, Lyme disease can spread to cause meningitis, carditis, neuropathy, or arthritis. The usual treatment for Lyme disease is 2-4 weeks of antibiotics, which is highly effective.

Alternative medicine practitioners claim that Lyme infection can become chronic and attribute a vague constellation of symptoms not unlike the vague constellation of symptoms attributed to adrenal fatigue to chronic Lyme infection, a condition they commonly refer to as chronic Lyme disease. It’s not all just alternative medicine practitioners, though. A group of physicians who like to refer to themselves as “Lyme literate” physicians describe patients whom they believe have persistent B. burgdorferi infection, claiming that the condition requires long-term antibiotic treatment.

Now, there is a condition known as posttreatment Lyme disease syndrome, which is the proper term for patients with a verified previous B. burgdorferi infection who experience fatigue, arthralgias, or other symptoms six months or more after antibiotic treatment when all other conditions have been ruled out. However, there is no evidence that this syndrome is caused by chronic B. burgdorferi infection, nor is there any good evidence that prolonged treatment with antibiotics benefits patients with persistent symptoms after treatment for Lyme disease—quite the contrary, actually. At least five five randomized, placebo-controlled studies have shown that prolonged courses of IV antibiotics do not improve long-term outcome for patients with a diagnosis of chronic Lyme disease (e.g., this one). The evidence is about as solid as evidence gets in science-based medicine that prolonged courses of antibiotics do not help these patients and in fact harm them. Yet these “Lyme literate” physicians and a coterie of naturopaths treat patients with symptoms after Lyme disease for weeks, months, or even years of antibiotics, and there are many known complications to long term antibiotic treatment.

These potential complications have been illustrated in a recent article in the CDC’s Morbidity and Mortality Weekly Report (MMWR), Serious Bacterial Infections Acquired During Treatment of Patients Given a Diagnosis of Chronic Lyme Disease. The report begins:

The term “chronic Lyme disease” is used by some health care providers as a diagnosis for various constitutional, musculoskeletal, and neuropsychiatric symptoms (1,2). Patients with a diagnosis of chronic Lyme disease have been provided a wide range of medications as treatment, including long courses of intravenous (IV) antibiotics (3,4). Studies have not shown that such treatments lead to substantial long-term improvement for patients, and they can be harmful (1,5). This report describes cases of septic shock, osteomyelitis, Clostridium difficile colitis, and paraspinal abscess resulting from treatments for chronic Lyme disease. Patients, clinicians, and public health practitioners should be aware that treatments for chronic Lyme disease can carry serious risks.

Noting:

Chronic Lyme disease, on the other hand, is a diagnosis that some health care providers use to describe patients with a variety of conditions such as fatigue, generalized pain, and neurologic disorders. Many of these patients have experienced significant debilitation from their symptoms and have not found relief after consultation with conventional medical practitioners. As a result, some seek treatment from practitioners who might identify themselves as Lyme disease specialists (“Lyme literate” doctors) or from complementary and alternative medicine clinics, where they receive a diagnosis of chronic Lyme disease (3,7).

A diagnosis of chronic Lyme disease might be based solely on clinical judgment and without laboratory evidence of B. burgdorferi infection, objective signs of infection, or a history of possible tick exposure in an area with endemic Lyme disease (1,7). There is a belief among persons who support the diagnosis and treatment of chronic Lyme disease that B. burgdorferi can cause disabling symptoms even when standard testing is negative, despite evidence that the recommended two-tiered serologic testing is actually more sensitive the longer B. burgdorferi infection has been present (6). Some practitioners use tests or testing criteria that have not been validated for the diagnosis of Lyme disease (1). A significant concern is that after the diagnosis of chronic Lyme disease is made, the actual cause of a patient’s symptoms might remain undiagnosed and untreated (3,8).

This is how pretty much every fake disease is diagnosed, particularly the part about “specialty” laboratories using non-validated testing methods and diagnostic criteria. (Again, echoes of adrenal fatigue.) The consequences of such diseases can be dire. Indeed. I remember an article last year about a woman with multiple sclerosis who sought out a Lyme-literate doctor and was given a diagnosis of chronic Lyme disease. She never went back to her conventional doctor and instead continued to be treated for chronic Lyme disease. Not surprisingly, she continues to have symptoms of multiple sclerosis, because her disease is untreated. Who knows how many patients out there with real medical conditions that are hard to diagnose and treat (like MS) are on long term antibiotics for chronic Lyme disease?

Some even die from complications related to their “therapy”:

A woman in her late 30s with fatigue and joint pain received a diagnosis of chronic Lyme disease, babesiosis, and Bartonella infection by a local physician. Despite multiple courses of oral antibiotics, her symptoms worsened, and a peripherally inserted central catheter (PICC) was placed for initiation of IV antibiotic treatment. After 3 weeks of treatment with IV ceftriaxone and cefotaxime, the patient’s joint pain continued, and she developed fever and rash. She became hypotensive and tachycardic and was hospitalized in an intensive care unit, where she was treated with broad spectrum IV antibiotics and required mechanical ventilation and vasopressors. Despite maximal medical support, she continued to worsen and eventually died. The patient’s death was attributed to septic shock related to central venous catheter–associated bacteremia.

That’s right. “Lyme literate” doctors sometimes place long-term intravenous access in order to administer antibiotics. Yet long-term indwelling intravenous catheters have complications. They clot. They become infected. Sometimes those catheter-associated infections result in fatal sepsis, as in the case above. Infections are less common than clotting problems (and pretty uncommon in PICC lines), but when the benefit of the treatment is zero, as it is for long term antibiotics for chronic Lyme disease, then what we’re dealing with is all risk, no benefit, and even if they don’t die of their infection, the sequelae can be very serious, as this other case described in the MMWR report, an adolescent girl who received several months of oral and IV antibiotics and suffered an infection of her PICC line:

One week after antibiotics had been discontinued, the patient developed pallor, chills, and fever to 102.9°F (39.4°C); after consultation with the alternative medicine clinic, she was given another dose of ceftriaxone through the PICC. Later that day she was evaluated in an emergency department with fever to 105.3°F (40.7°C), hypotension, and tachycardia consistent with septic shock. Blood and PICC tip cultures grew Acinetobacter spp. She was hospitalized in an intensive care unit and required vasopressors as well as broad-spectrum antibiotics to treat the infection. The PICC was removed, and the patient was eventually discharged after several weeks of hospitalization.

Yes, seven weeks in the hospital, much of it in the ICU. It never ceases to amaze me how alternative practitioners castigate conventional medicine for administering treatments that have side effects and then think nothing of co-opting such treatments, even placing indwelling catheters that can become infected, in order to administer the products of big pharma unnecessarily, as most of the cases discussed in the MMWR report show. One of these patients developed osteomyelitis and a paraspinal abscess that required surgical drainage.

However, catheter-associated infections are not the only risk of long-term antibiotics, although they are one of the most potentially deadly. “Lyme-literate” doctors might claim that the complications above were due more to the catheter than to the long term antibiotics, but long term antibiotics generally require the placement of an indwelling catheter, be it a PICC line, a Hickman, a Broviac, or a subcutaneous reservoir like a Mediport. One complication that is straight up due to antibiotics is Clostridium difficile colitis. C. difficile colitis is a complication that can occur from nearly any antibiotics, although it is more common with clindamycin, and it can occur after oral antibiotics, no IV antibiotics necessary.

Consider this tragic case:

A woman in her 50s developed progressive weakness, swelling, and tingling in her extremities and received a tentative diagnosis of chronic inflammatory demyelinating polyneuropathy. Despite various treatments over a 5-year period, her symptoms did not substantially improve, and a diagnosis of amyotrophic lateral sclerosis was made.

The patient was subsequently evaluated by another physician and was told she had chronic Lyme disease, babesiosis, and Rocky Mountain spotted fever. Initial treatment with herbs and homeopathic remedies had no effect. She was treated with IV ceftriaxone and oral trimethoprim-sulfamethoxazole, acyclovir, fluconazole, and tinidazole. After 7 months of intensive antimicrobial treatment, her pain improved, but the weakness worsened. She discontinued treatment after developing C. difficile colitis that caused severe abdominal cramps and diarrhea. The C. difficile infection became intractable, and her symptoms persisted for over 2 years, requiring prolonged treatment. The patient subsequently died from complications of amyotrophic lateral sclerosis.

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease affecting motor neurons. There is no cure, and there are only two FDA-approved drugs that I am aware of that slow the progression of the disease. Neither prolong life that long, and the one that was recently approved, Radicava, costs $145,524 a year and has not yet been shown to prolong survival. Reading between the lines, one can imagine that this woman might have been in denial over her diagnosis, given that ALS is a relentless and terminal disease with no good treatment that arrests the progress of the disease, leaving supportive care as the only option. One might imagine that the diagnosis of chronic Lyme disease gave this woman hope that maybe she didn’t have an invariably fatal disease after all. Instead of the hoped-for result, she continued to deteriorate and had to deal with chronic C. difficile colitis for the rest of her unfortunately short life, decreasing the quality of her remaining life significantly. One can only imagine dealing with the abdominal pain, diarrhea, and fevers associated with C. difficile as one becomes progressively weaker and less able to control one’s muscles.

Skeptics like to point to homeopathy as the ultimate quackery. I even like to refer to it as “The One Quackery To Rule Them All.” However, most homeopathic remedies other than the ones contaminated with other substances or drugs are basically water. They don’t help, but they usually don’t cause significant harm themselves, other than being ineffective. (Their ineffectiveness allows whatever disease is being treated to progress.) The treatment of chronic Lyme disease is different and much worse. It involves not only serious problems like the selection of antibiotic-resistant bacteria, but injuries related to unnecessariy procedures, sepsis due to bacteremia, vein clots, and missed opportunities to diagnose and treat actual underlying diseases and conditions. The MMWR report notes that number of people who undergo treatments for chronic Lyme disease is unknown, as is the number of complications that result from such treatments, noting that systematic investigations “would be useful to understand the scope and consequences of adverse effects resulting from treatment of persons with a diagnosis of chronic Lyme disease.” Unfortunately, belief in the entity known as chronic Lyme disease is very cult-like. No matter how large the number of people undergoing unnecessary and prolonged antibiotic treatment, no matter how many people suffer complications of that treatment, ranging from minor to severe to death, I doubt that it will stop the quacks who call themselves “Lyme literate physicians.”